Discussions By Condition: I cannot get a diagnosis.

Seizure-like symptoms but tests normal

The story below has been submitted anonymously through our 'Share your story' feature:

My daughter has been having seizure like symptoms. She knows when the episodes are about to happen. Shortly after, all color in her skin drains, she passes out, her eyes roll back in her head, her breathing gets severely labored, drool comes out her mouth, and her whole body shakes severely; she doesn't wet herself.

After a few seconds to minutes, she comes out of it. She might have just one or start to come out of it and go right back into it several times. I've been told by one of her teachers that she stopped breathing during the time when she had nine back to back.

Afterwards her blood pressure is low, she still has some shakiness, very tired, and says its hard to think.

The doctors say all the test are coming back to normal and they think she is having a psychosomatic disorder. I have checked several places and cannot find anything with these symptoms for psychosomatic disorders.

24 Replies:

Her EEG was completely normal, during waking and sleeping? Please find a very good neurologist even if you have to travel. I know this is frightening, and must make for a horrible quality of life for both of you. A new specialist is where I would begin.

I agree with the above post... I'd find a neurologist if at all possible. Did they do a sleep depreviation seizure test (where she stays awake all night, and then they test in the morning?). Has she had her blood sugars tested fasting for diabetes or other chemical imbalances?

After fighting cancer and an undiagnosed auto immune disorder with my husband, I am writing to tell you do not take the medical professionals word that everything looks normal. Fight and keep fighting until you get an answer! Don't go with out an answer.... You will get lost in the politics of the medical profession. Demand the best and all tests that can be done! When they say there are no more tests find another doctor. Good Luck and you are in my thoughts!

Excuse me for my language, but psychosomatic disorder my **s. I first fell ill as a teenager and it's been nearly a decade...now they are saying "MS". My roommate has obvious signs of systemic lupus and has been chronically ill and in pain for 25 years w/o a diagnosis. I've known countless others who have been sick for years, often having severe and frightening symptoms such as paralysis, seizures and immune disfunction, and are still being told by docs that "it's all in their heads". Any diagnosis of "psychosomatic" is a polite, if you can call it that, underhanded way of saying just that. However, I strongly believe it's not all in her head. Seizures are not something to take lightly. Please get a good neuro and reassure your daughter every day that she's w/o a proper diagnosis that she is by no means crazy, nor is she overreacting or making things up. Take it from a 21 year old who's been to ***l and back because of unsupportive parents, *****y, underpaid doctors and a ruthless public healthcare system. It's NOT NORMAL to get it on the first EEG, MRI, whatever. Most of us have had tons. Although I have an abnormal MRI and lumbar puncture, my neuro exam has only been slightly abnormal once out of many, many times. If the docs tell you to take her to a therapist, tell them to screw off, unless it's a therapist for dealing with a chronic disease. Then go get a good neuro now, no matter what you have to do financially, because it will save you the heartache and probably larger amount of money you would eventually end up paying anyway. Good luck to you and I'm sorry the both of you have to go through this. If either of you need someone to talk to, my email is calculatedeccentricity@yahoo.com. I'm currently a full-time student and full-time employee, and disabled, if that makes a difference. Love, Quinn

Thank you, Quinn, for a strong and true statement.For several years my mother was diagnosed with "a womans stomach" - a not-so-polite description for psychsomatic symptoms. When the doctor finally agreed to a scan it was far too late. They operated on her right away but the colon cancer had already saturated her liver and she died the next year.I would also suggest checking the ingrediants in her foods. There are a couple of chemicals that can cause similar reactions in selected people. For a start make sure she is not getting any aspertame in her diet (this can now be found in a variety of products including childrens multi-vitamins and most gums).GP.

Request an extensive 5 day recording at home under her normal conditions for example attend school and continue with all normal daily activities.Normal eeg reading do not exclude epilepsy.Contact your consultant and request a consultation with a childrens neurologist.You should also consider starting a statement of special educational needs on medical grounds.My son had seizures that sound very similar to your daughters and his original diagnosis was the same until the extensive tests (which i requested) and they found masses of sub clinical activity during sleep. You know your child if she was a fairly happy child with no problems in attending school, had no problems with her peers, home life normal etc etc.., then why such a diagnosis. Its epilepsy they have not done the right tests. Good luck.

Hi, I am now 19 years old now but I want to tell you my story so you can understand that even if a person has a Doctorates degree that does not mean they are always right. My sophmore year of high school I was going through seizures just like your daughters where I could feel the seizure coming on and then it would go away. I never told anyone anything about it because I was scared, which I am sure you're daghter feels like as well. However, not telling someone was the biggest mistake I ever made. The only people who knew about my seizures were my friends at school and they never said anything to anyone either only one time that I was doing a presentation in class did my teacher see that I was having a seizures because I was not responding to her in any way possible and by the time I got back to myself I had already been taken to the nurses office in my school and my mom had already gotten there and so I was taken to Children's Hopsital in Boston where I had many other spell's and they directed me to get an EEG exam and I did come out with abnormality but the doctor's said all I had was seizures and I just needed to get the medication for it so they sent me to a student like doctor who was doing her Fellowship in Children's Hospital Dr. Nicole Ullrich and she was the one who saw another of my seizures occur and said that it was not only seizures and she was sure of it and so the dat before my 16th birthday I got an MRI and they found that I had a tumour the size of a lemon in my brain and that they needed to so surgery on me as soon as possible. I got that surgery done and the doctor said I was cured for life. However, three months later I got another MRI just to be sure everything was ok and then the doctor's said that they needed to do surgery again because they did not get the entire tumour (at least they thought). When they did the surgery I got another MRI 3 months later and then this was my Juniot year of high school and they saw that the tumour had actually grown back again and that the last surgery it wasn't the fact that they left part of the tumour in my brain but the fact that it has already grown but my seizures actually stopped due to the surgeries. I was then put under 6 weeks of radiation and 2 years of chemotherapy this January of 2007 it will be 1 year since I have been off of chemotherapy. However, I am actually started to have seizure-like-symtpoms again and my doctor's did the EEG and saw nothing and now I am awaiting for my 3 day EEG test that I took during Thanksgiving break to see what the results of that is and I am still being watched on my tumour as well, so please try to do any test possible to you're daughter even try to get an MRI done because you never know what thing's can really be. During my senior year of high school I actually got the Shingles (which is a word for the 2nd time of getting the chicken pox but much more severe) well I was in the hospital for 3 weeks and a nurse there actually overdosed me with Methadone and Morhpin and OC's because she thought I was in more pain because of the Shinggles while I was sleeping and actually made my line to go flat for a long time. Just because of my mother who stayed with me through the entire time I am alive today because even when the room light went red no doctor's came to the room to see what had happened my mother had to go and grab them. So please do not trust anyone but you're daughter and do not accept that she is having Psychomatic issues because it is not true the doctor's are just giving up too soon but I know you won't. Goodluck with eveything and I do not know where you live but if you do live in the Boston area I give you the best advice to try to check out Dr. Nicole Ullrich because she is a great doctor who never gives up on anyone!Good Luck, Eileen

My husband (36 years old, 10 years of this) is going through something like this. He's been to a cardiologist (after having him hooked up to monitors during them) because his heartrate and bp drop dramatically- heart's fine. A neurologist at University Hospital in Cleveland ran several non-evasive tests (tilt table, sweat) and found that he's having something called Autonomic Seizures. He's still testing, but I just wanted to wish you luck- the brain is a complicated place and even a PHD can get it wrong. (((fingers crossed)))Kim

also, have her hormones and her sugar checked. my sister was having seizures and it turned out she has a condition called hyperinsulinism, where her pancreas makes too much insulin and when her blood sugar gets too low she has grand mal seizures. i also have had petit mal seizures off and on. I can go where there are strobe lights, for instance, and close my eyes when my head starts to feel funny and it goes away. just a thought.I haven't been on medication since I was 15 (I am now 33) and I haven't had an EEG since that time, either. But if she can tell when she will get them, there is more than an electrical birthmark going on, i'd wager.

On the TV show about unknown diagnosis, a little girl was having something happening to her. Her tests all came back normal, but the neurologist pursued it with further tests. They did a sleep study with a camera and hooked up her brain. It was a rare condition and not seen very often--hard to read in the ekg--but it was seizures; so you need to change doctors. I suppose they did rule out diabetes..

One little known cause of seizures is Hashimoto's Encephalopathy. It's a rare complication of autoimmune thyroiditis. It's diagnosed by checking thyroid antibodies, even if the hormones are normal. It took me 8 years to find a doctor who knew about it to get diagnosed (i never had seizures but 50% of patients do).Best Wishes.I hope they figure this out soon if they haven't already (the original post is a little old)

The story below has been submitted anonymously through our 'Share your story' feature: My daughter has been having seizure like symptoms. She knows when the episodes are about to happen. Shortly after, all color in her skin drains, she passes out, her eyes roll back in her head, her breathing gets severely labored, drool comes out her mouth, and her whole body shakes severely; she doesn't wet herself. After a few seconds to minutes, she comes out of it. She might have just one or start to come out of it and go right back into it several times. I've been told by one of her teachers that she stopped breathing during the time when she had nine back to back. Afterwards her blood pressure is low, she still has some shakiness, very tired, and says its hard to think. The doctors say all the test are coming back to normal and they think she is having a psychosomatic disorder. I have checked several places and cannot find anything with these symptoms for psychosomatic disorders. Any ideas? psychosomatic illness... bullcrap! did you know that the first AIDS patients all got told their illness was psychosomatic before the doctors got to know about AIDS? MS patients used to be told too that there condition was psychosomatic.. before doctors knew about that illness. The same thing is going on with Chronic Fatigue syndrome nowdays, with many doctors still thinking it is. The fact is that IF doctors dont know what is wrong with a patient and their tests arent noticing abnormalities.. they usually will say it's a psychosomatic illness. Doctors hate to think that they just dont know what is wrong and an illness they cant work out, is just easier for them to call "psychosomatic" and just dismiss. I have heard of some people with psychologial illnesses or very high anxiety passing out (but it's highly uncommon).. but not passing out with like seizure activity... that is neurological. Has your daughter seen a neurologist yet? She needs to see one or if she's already seen one and he couldnt work it out... try taking her to another one. oh by the way.. no real psychosomatic illness would cause low Blood pressure! How did your doctors explain that symptom away? If she was having high anxiety attacks causing a pass out (thou they dont cause seizures).. her BP would go up.. not down........... Please please fight for your daughter with this and fight to help her find a doctor who believes her and will keep trying to work out the answer. My own daughter went throu many years of school.. from primary to nearly all the way throu high school...with eye sight so bad that she couldnt read the blackboard at all (other students had to tell her what was written). As her first eye doctor, thou he could tell she had a sight problem, he couldnt work out exactly what it was so he sent her to a childrens eye doctor. This childrens eye doctor thou didnt believe that she had a problem seeing... and told her she was making it up and for me to ignore her. He said that he sees about 3 girls a year who make up things for attention and said the problem is just in girls. I didnt know what else to do, or where to take her so i left things (I have a serious illness myself, so it was hard for me to keep trying to seek help for her at that point). My daughtered ended up going to live with her father who took her to a third eye doctor (she was about 15 by that point.. and had had sight issue with not able to see black board since primary school).. and that doctor was shocked.. as her sight is bad. She's now got glasses and can see properly. Thing is she ended up leaving school due to all this.. as she got so many years behind with not able to see. So that doctor not believing.. has affected her whole life.

The story below has been submitted anonymously through our 'Share your story' feature: My daughter has been having seizure like symptoms. She knows when the episodes are about to happen. Shortly after, all color in her skin drains, she passes out, her eyes roll back in her head, her breathing gets severely labored, drool comes out her mouth, and her whole body shakes severely; she doesn't wet herself. After a few seconds to minutes, she comes out of it. She might have just one or start to come out of it and go right back into it several times. I've been told by one of her teachers that she stopped breathing during the time when she had nine back to back. Afterwards her blood pressure is low, she still has some shakiness, very tired, and says its hard to think. The doctors say all the test are coming back to normal and they think she is having a psychosomatic disorder. I have checked several places and cannot find anything with these symptoms for psychosomatic disorders. Any ideas? Ok this post is over a year old so I hold little hope of this helping this person, if it does than great! But at least for anyone else who reads this I can cast some light on this subject...My sister has seizures exactly like what has been discribed here, she too had a clean EEG but we know it is NOT psychosomatic because I have them now too and my EEG did show my seizure activity. I talked to a few doctors and though some refuse to accept that seizures do not always show up, more told me that it happens. Some Epileptics do not show anything on their EEGs and that is just the way it is, does not mean the seizures are not real. Just to add to that, never trust one doctors opinion on something this important...I have a friend who has been having seizures for years, he says it is from a head injury when he was younger, the doctor tells him that a past head injury could not be causeing his Epilepsy!! HELLO look up seizure disorders and you can find a ton of info explaining how a head injury, even years prior can eventually lead to seizures! On the same token....it took me two years aprox, to get a tumor removed from my belly..I knew it was a tumor but every doctor who passed me around said it was a hernia.......after the surgery when I woke up the doctor grinned sheepishly and said. "Ha well you were right! I removed a tumor the size of a lemon from your abdominal wall." Yeah...ha freaking Ha huh?

Sorry about your tumor, Candle. I hope you felt vindicated after they removed it.And taniaaust1.. I love your comment about psychosomatic illness... bullcrap and the first AIDS patients.I think a lot of us who post here have been in the same boat, with doctors who have written our symptoms off just because the labs come back okay.I remember one doctor who said: "so you think you're sick, huh?" and he obviously did not believe me or my symptoms (or my fast reflexes, etc). It's quite humiliating being treated like you're nuttier than a jar of Skippy peanut butter when your labs don't show anything.Sadly, this is more often the result of either the doctor not knowing enough, or the whole medical community not knowing all the answers to a particular disease or syndrome yet.And it's the patient who pays the price until they ultimately get vindicated. It's really hard to do a hernia repair on a tumor, etc...

My response is for support...NEVER let them blow you off. My daughter complained at 12 years old of pain in her stomach and nasea. I took her to the doc, he ran blood and everything came back on that thursday as normal so he blew her off. saturday morning at 6 am she wakes me up saying she hurts really bad and wants to go to the hospital. The ER won't treat her until they do a pregnancy test..(she's 12). I say fine, just do it. They run all kinds of blood tests and don't find anything wrong and I ask them to test her Gall Bladder and they said she was too young to have a problem with her Gall Bladder. I responded with, "Well, she is too young to be pregnant too, but you required it before you would treat her." They ran an ultrasound on her stomach and find a huge cyst on her ovary but before she made it back to the ER, she was vomitting bile from a completely plugged Gall Bladder and had to have "Emergency" surgery. Always listen when your kids tell you they have a problem. We ask them to talk to us when they do and what message are we saying if we ignore them when they need us the most. I am out here because my daughter needs me the most now then ever trying to find anything to help her illness so I wish you and your daughter the VERY BEST and my God Bless. With the support you have out here, your daughter will get the help they need.

YES, keep seeing doctors till you get answers. They are ALL different I have found and it is tough to get answers and expensive. Co-pays add up, I know! I saw a show where a woman was always having seizures and it turned out to be an underlying cause with her heart that triggered the seizuers. Did they rule out any heart issues?

I was told I had seizures just like the ones you subscribe all were normal except for one or two. I saw a neurologist he set me up w/ a hospital in rochester ny and they put leads on my head for a week I had several seizures and some I did wet myself, drooled, shaked, my husband was a wreck. The day came when the results were in and hey said I had psychosomatic disorder. My husband said there was no way I could have this all due to stress.. I went back to my neurologist a month later he still thinks its epilepsy because I am still having seizures...I hope you make out well! But get a nerulogist.

This may sound strange, but have you looked in Tourettes? It not just about swearing, and verbal outburst, people with tourettes can suffer severe motor tics which often present like a siezure. You can also look into chronic motor tic disorder which also can present as a seizure. Hope this helps. Best wishes.

My heart sank when I read this!I'm a 37 year old mother of 4 who has suffered from a seizure disorder since the age of 14.Back in the 80s the standard reply to any female suffering from this type of condition seemed to be that it was 'psychosomatic'! I was quite literally physically abused by ER doctors who thought they'd 'prove' this by sticking needles into the nailbeds of my hands and feet, exert extreme pressure on my sternum and other nonsense. Sadly, my parents bought the 'she's doing this for attention' speech. I was thrown out of ER's in my teens and left in the snow and rain......once resulting in pnuemonia!To cut a very long and quite disturbing story short - during the pregnancy/birth of my first child (with the support of a wonderful husband!) it was noticed by a doctor that I may have a problem with my spinal fluid - mostly resulting from a horrendous time with an epidural!- and this was then measured during a lumbar puncture ('spinal tap' if you're in the US I think!). It was discovered that I had an immense problem with pressure on my brain due to an increase of spinal fluid and this was drained at regular intervals. I apologise, for the life of me I can't remember the exact medical term for this....it was almost 16 years ago! Apparently, this is a common cause of seizures, especially in women as the fluid can increase before menstruation. I now take Diamox to control this and have had NO SEIZURES since! I had my GP write to every ER/hospital and consultant in the region who had treated me badly in the past .....mostly as a slap in the face to them, but also so that maybe attitudes will one day change! Similarly, my eldest daughter (now 15) had serious problems with seizures/headaches/drop-attacks and generalized weakness almost from birth. Perhaps because of my own past I refused to accept that she was 'trying to have a day off school' (!) and persisted in getting a diagnosis.........3 years in the end. It was discovered that she has a condition by the name of 'Arnold Chiari II malformation' and she had successful decompression surgery in 2002. At the same time her neurosurgeon suggested that because of my past I may also have the same condition. It turns out that I do, but to a much milder degree and not requiring surgery.I applaud every mother, father or carer out there who persists in getting a sane, comprehensive diagnosis of their child's ailment or illness.......we can only keep trying and questioning the diabolical explaination of 'psychological illness' or, in my case the (almost) life-long label of 'psuedo-seizures'.Please, anyone who listens to this abusive labelling and knows their child as every parent does, seek alternative advice, treatment or care. xx

I am having the same issue with my son. They said phseudo seizures. I've been doing research and it might be a heart condition, cardiovascular syncope. See a cardiologist. All our tests show no signs of seizure activity in the brain. Don't let them send you home without seeing a cardiologist. I hope this helps, good luck.